Today is 2 years since John died. I’m just trying to get through the day, keeping busy and watching the clock until I go to bed tonight.
I can’t recall if I ever wrote about his actual death. Writing helps me and so I’d like to share that experience with you.
Thursday Oct. 8, 2015. We had been at the hospital since Monday, John being treated for blood clots again after a brain hemorrhage forced the cessation of blood thinners. I knew when they took him off those he would clot again and that would be the end. I was sadly correct.
We had booked an appointment with the top brain cancer specialist at Dana Farber , for this day, a month previously. Since we were in the hospital and the doctor was restricted by insurance issues , we had to get John into an ambulance and drive him 50 yards across the street. Ridiculous. Anyway the specialist looked at his latest brain scans and said he thought the tumor was shrinking ! Good news, finally, a ray of hope. My daughter and I were thrilled, John just asked the doctor how much time did he have left.
So the ambulance drives us back across the street, we get John back in his room, he promptly falls a sleep and sleeps through lunch. Our daughter leaves with a smile to go run some errands, we think we are out of the woods and it’s all good.
Not so fast. In a bit John wakes up and tells me he has to use the bathroom. As his legs are extremely swollen, he needs help to get up and out of bed and to the bathroom. Should I get the nurse, I ask. He says no, he can do it. I go to grab his IV pole and help him to the handrail to balance, he shuffles to the bathroom door as I hold my breath expecting his legs to collapse. At the door I tell him to go in, I’ve got the pole. He says NO in a very determined voice, a voice he rarely uses. I sputter and remind him I always help him , I’ll just come in like I always do. Again he answers NO and raises his voice, very unlike him. He tells me to sit down, wait for him, he’ll be fine. Against my better judgment I do as he asks and take my seat by his bed.
Not 15 seconds later, a huge thud, metal clanging, he had fallen off the commode onto the floor, his body hit the metal guardrails on descent. I jumped up, pulled the red emergency lever and started screaming. He was semi conscious. It took several people to get him up, he was 270 lbs, 6 ft 1 “. They finally did and threw him into the bed, almost knocking his head on the rail, I was so angry at their clumsiness.
He was semi conscious, they asked him questions, he slurred the answers then his breathing became strained. It got worse. The doctors kept looking at each other, their eyes speaking a language all their own. John struggled harder to breathe. I stood by helplessly. It seemed like an hour but it was probably just a few minutes if even that. The doctor asked if they should intubate and I answered no. That’s another post, so I’ll leave it at that. The doctor told me I made a good decision. I wasn’t so sure as I held John’s hand and talked him into the next life.
My hope is that none of those I love ever have to watch their love struggle to take their last breath. There are no adequate words to explain this horror.
He stopped breathing. At that moment I felt his soul leave his body. Skin and bones and flesh transformed into a lifeless casing, their jobs done. This was not John. It was his temporary home for 58 years.
Yet I stayed with him, holding his hand, kissing his lips, his head, taking in the smell of him, storing it away in my memory . I was unable to comprehend the moment. Brain waves had stopped, heart had stopped, blood had stopped, soul had left. Yet his body was here, the body I had coexisted with since 1978, so joined that his body was my body. The two had become one. Was I dead too ? Wait. What just happened ? John died ? No, that’s impossible. No. No. No. I screamed between soothing him lifeless body. No. No. No. come back. No. You can’t die. No.
Then doctors mumbled apologies, condolences. Nurses came and explained the next steps. Family arrived and I froze to my place, unable to move because that would mean he was really dead. Wait. No, that can’t be what happened. Of course he’s not dead.
The hospital chaplain came and we said some words, we cried, and one by one people left me to be alone with my John for the last time. The last time. Wait. No, this is not happening. No. No. No.
The widely accepted theory of the the five stages of grief puts acceptance as the last stage.
We grievers know that this theory has many flaws. First, Kubler-Ross never intended it to become the gospel of grief, as she developed it for terminally ill patients, not grievers.
At first, the map of the stages seems very helpful. It gives our wild and broken hearts a purpose and a goal. If we can just get past denial, then express our anger , we can move on to the bargaining, and hopefully finish this nasty work of grieving. It sounds like a plan, something we can accomplish if we put our minds to it.
But Grievers quickly come to realize that the stages are not linear. Its not like stepping stones over a raging river, where you place one foot then the next on each stone to make it safely across. The stages mix and mingle and wrap around each other, forming a jumbled knot of emotion , not easily untangled. The waves of grief arise from calm waters and knock us off balance, losing our grip. In reality, we swim in and out of the stages of grief. In a heartbeat and without warning, anger can rear its ugly head, denial can seem plausible, and we can go right back to day one of our grief journey. We begin again.
Acceptance . What does it even mean ? There is a pop psychology guru who preaches ” radical acceptance” , which I suppose is acceptance 2.0 on steroids. It basically holds that kicking and screaming against the inevitable is useless, and that surrendering brings peace. So how does this apply to grief ?
What does it mean to accept death ? Do I stop thinking that there is a real chance that John will come back ? That maybe I’ll wake up and this will all be a bad dream ? That someone will rewind the clock back to when I had a wonderful life ? All reasonable ideas, for someone not grieving.
How do grievers not accept the empty bed, the empty place at the table, the destroyed family, the uncelebrated holidays, the loneliness. It’s what we live every minute of every day. It’s our reality. We have no choice but to accept it. We don’t have the luxury of saying, “sorry, could you take that back ? it’s not what I ordered” no, we choke it down because we have no choice.
Maybe what they mean is to come to a place of being OK with death, with loss, with your entire world gone. Being OK with being alone, facing the rest of your life without the one person who gave it meaning. Finding peace in the tragedy. Rainbows, silver linings, all that stuff people say to push you along so your grief doesn’t make them too uncomfortable.
It’s never going to be OK. I may learn to walk with a limp, but I’m always going to want my leg back.
When I was a child I hated pea soup. I still do. Yet in my generation, kids ate what they were served and they cleaned their plate, like it or not.
Grief is my pea soup. I hate everything about it, the smell, the texture, the color, the taste. Yet I’ve been served a big bowl of it and forced to swallow it against my will. I will never accept pea soup. It’s not what I ordered.
The very first words out of my therapist’s mouth after expressing her condolences for John’s death were these:
“Margie, you have to learn to be alone.”
After 22 months of daily practice, I think I’ve mastered it. But like the kid who is forced against her will to take piano lessons, all the practice in the world won’t make me like it.
In fact, I hate it. Hate it, hate it, hate it.
Don’t get me wrong. For my entire life I have always enjoyed my “alone time” – in small increments, when I chose them. This enforced solitary confinement is a prison I desperately want to escape.
We widows are a sad bunch. There’s a popular blog called “Widows Wear Stilettos !! ” that attempts to put lipstick on the loneliness of widowhood. Huge fail. All dressed up and no place to go. Like Van Morrison sang “all the girls go by, dressed up for each other”
The loss of John left a crater that all my futile attempts fail to fill. Food, shopping, travel, drinking, socializing, gardening, exercising, Facebook, busyness all eventually end and my empty house and bed await my return.
The main difference between solitude and loneliness, between being alone and being lonely is choice. Voluntary vs. involuntary. At the end of a long day, it’s a choice to ask Calgon to take me away and retreat to the comfort of a warm bath, or whatever escape floats my boat.
It’s a completely different animal when at the end of my day, I come home to nothing, no one. Lots to say and no one to listen and respond. The silence is deafening. I adore my dogs but they are no substitute for human companionship. It’s both a blessing and a curse that they cannot speak.
Which brings me to Tom Hanks. Wait, what ?
IMDB summarizes the film “Castaway” featuring Tom Hanks, as
the story of “a man (Chuck Noland) who is marooned on an island after his plane crashes into the ocean. Far away from home, his girlfriend, and any human contact, he engages in a battle of wits with himself as he is tested mentally, physically, and emotionally in order to survive.”
Sounds like a brief and succinct description of widowhood to me.
“Chuck realizes that his priority is survival – which primarily means food, water, shelter and fire – and rescue. But survival is also in an emotional sense.
To fulfill that emotional need, he has an heirloom pocket watch with Kelly’s photo that she gave him as a Christmas present, and eventually opening the FedEx packages, a Wilson volleyball on which he paints a face and which he names Wilson.”
As a widow, the psychological concept in the movie that most interests me is the human need for social interaction. Like Noland, I often feel stranded alone on an island, with nobody to talk to. Days can pass for me with no conversation outside interactions with sales people at stores. In the film, Chuck makes a face on a volleyball, naming him “Wilson”, in order to create a “person” to talk to. Chuck projects his thoughts on Wilson, and then adds Wilson’s half of the conversation in his head.
Yup. Widowhood. Conversing with the dead. It can make you feel insane. Check.
As time progresses, Chuck goes through a range of emotions, but if rescue is ever in the cards, he realizes that he has to find a way to get off the island, which is seemingly impossible in his circumstance due to the strong on shore surf he cannot get beyond without assistance. What Chuck may not fully realize is the longer he is not rescued, the harder it will be for him to return to his old life in its entirety if he ever is rescued.”
Yup. Bingo. Widowhood. Must get off this island. Will die.
Must get off island.
The journey continues.
This popular country song came on my car radio as I was driving to work this morning.
Basically it’s a love song in which the man tells the woman that even if he never gets to fulfill his material dreams, because of her love he will die a happy man.
I hope with all my heart that is what my John thinks and believes in death. And I believe it is the truth.
We had 3 months from his diagnosis of GBM to his death from a pulmonary embolism to say everything that needed saying. To express our undying love for each other before one of us would die. To share memories, reminisce and remember all the good times we were so lucky to have together.
Road trips. Bike rides. Camping. Hiking. Snuggling. Our wood stove. Laughing. Crying. Hoping. Dreaming. Planning. Living.
One thing he said will stay with me forever. It ranks first in all the words he said in those 3 months. It was this profound bit of wisdom that only the dying understand:
“I spent my whole life worrying about stuff that doesn’t matter.”
Wow. Just wow. What stuff did he worry about ?
Because he was super responsible,he worried about providing for his family in material ways. He worked his ass off trying to be sure we had enough money. I still have no idea how he managed to pay our mortgage every month for 34 years, put 4 kids through college, and put food on the table with one income. But he did. And he lost sleep over it.
I think that’s what he meant about stuff that doesn’t matter.
He was an amazing husband and father. His material contributions were nothing compared to the infinite, unconditional love he showered upon us. He adored us. He gave everything he had to us, denying himself the simplest pleasures. After commuting to Boston for years he would come home with his huge smile and jump right into bathing the babies, reading to them, feeding them, putting them to bed. His greatest regret was missing so much of that time due to his commute. He once told me it was all ” a blur” to him.
Like the Beatles so eloquently put it:
And in the end
The love you take
Is equal to the love
Ain’t that the truth. My John was not a rich man in the ways our world measures wealth. But he was rich in love, and he gave it away generously. I hope this made him die a happy man.
It certainly made me a happy woman, so well loved, who misses him beyond words.
As Freda Payne sang back in 1970:
Now that you’re gone,
All that’s left is a band of gold
All that’s left of the dreams I hold
Is a band of gold
And the memories of what love could be
If you were still here with me
I’m not much for jewelry. John would joke I was a “cheap date” for that reason. Diamonds, pearls, gold do nothing for me. The only jewelry I wear is my engagement ring, wedding band, and anniversary band.
I took a huge step and removed my jewelry. All 3 pieces.
I’ve been trying to slip them off for a few weeks now. Once I realized I was ready mentally and emotionally, it became a physical struggle. Oh, the irony !
But they are off now. And the imprint remains. Indented flesh,untanned. 35 years leaves an imprint both physically and emotionally.
Among widows, when and if to remove wedding rings is a hot topic. We cherish the sacredness of the ring and the eternal love it represents. In the storm of grief, it provides safety and security.
Many widows wear their rings forever, if not on the finger then around their neck or incorporated into another piece of jewelry. Some replace them with a widow band, set with black stones.
Some remove them immediately or soon after the death of their spouse. Like every other choice widows make, this one is highly personal.
For me, I had to remove them in January for my surgery. I considered then not putting them back on, but I was not ready yet.
What’s changed since then ? Why am I now “ready”
I’ve learned a very important lesson recently in the search for who I am.
I had a wonderful marriage. I was a lucky lady to be so well loved and cared for by a man I respected and adored, whose kisses and winks still gave me butterflies after almost 40 years of being his girl. Not only did we truly love each other, we were in love.
Being loved like that is a wonderful and rare gift. Many never experience it. I did.
And I want to experience it again. Being loved makes me feel alive. At a cellular level, at a chemical level, whatever the brain does when you are in love does indeed make the world go round. It’s a many splendor-ed thing.
Despite my desire to, I didn’t die with John. For many many many dark days I wished I had. I felt like I had died. I felt dead. The flame had been extinguished. There was nothing ahead for me, just more sadness and emptiness.
People showered me with platitudes – life goes on, everything will be fine, hang in there, John wants you to be happy —etc etc etc. But my grief drowned them out.
It wasn’t until I could say those words myself and believe them that I could hear hope and promise whispering.
The whispering turned up the volume, serendipity got busy and life began to bloom again.
So removing my rings is a milestone marker. It declares that I survived, that I am going to be OK, that I will make it and most importantly —-
THERE IS MORE FOR ME.
I keep hearing John telling me that. And I believe him.
Staying home sick from school in the 60’s was a treat. I got the couch, a real pillow, a handmade afghan in shades of gold, brown, and orange. I got my soup, drinks, and medicine brought to my side and placed on a collapsible TV tray table. My mom would check my forehead for signs of fever, and oh the tang of St. Joseph’s children’s aspirin !
But the best part was daytime TV, limited as it was with only 3 channels. The pre-cable selections amounted to Lucille Ball and Dick Van Dyke, Merv Griffin, and old lady soaps. The best entertainment was the game shows, classics like The Dating Game, The Newlywed Game, and everyone’s favorite, Let’s Make A Deal.
Basically the audience would try to attract Monty Hall’s attention by donning an outrageous costume, then compete to win prizes by choosing a door numbered 1-3. If dissatisfied with their prize they could trade it for an unknown prize- sometimes better,often worse -hidden behind another door.
One of the 5 stages of grief outlined by Elisabeth Kubler-Ross is bargaining. It follows anger and depression in the falsely accepted linear grief progression.
Prior to experiencing the loss of my husband to brain cancer, I understood the bargaining phase to be a time of making deals with your higher power, be it a god, the universe, or whoever you deem to be pulling the strings and writing your plan. Basically it involves intense prayer and begging for a cure, good test results, surgery success, and perhaps a miracle. It includes chapel visits, masses, novenas, securing multitudes of people praying worldwide (because if enough people pray, god will listen), personal sacrifice and promises to pull your weight. “Please, god, if you cure my spouse I promise I’ll go to church, stop drinking, pay back the money I stole, be faithful, stop beating my kids, etc” And god is so moved by your sacrifice that a miracle occurs and he gets all the credit. Um, no.
As a non-believer, this didn’t apply to me. There was no one to deal with. I certainly couldn’t trust a god who distributed illness to take it back . It wasn’t until recently that I came to truly understand the nuances of the bargaining phase.
Bargaining is really playing the dangerous game of “if only”
- if only we had caught this earlier
- if only the doctor had sent him for a CT scan when he complained of headaches
- if only we had moved to Maine last year, we could have enjoyed a year there (at least) together
- if only we had more time
- if only they had warned us of blood clots developing
- if only he didn’t develop blood clots
- if only that macrobiotic, organic diet was a true cure.
- if only he had gotten this later, there would be a cure
Bargaining is playing “would-a, could-a, should-a” ad nauseum. Round and round, back and forward, rearranging the what if’s and coming back to the reality that it is what it is.
And it sucks, and you have no control, and you just have to deal with it.
So you make a deal. The deal is you will love and love and love and love some more until you run out of time. You will cherish every second and not waste another one trying to change your reality. You will make your last days with your husband as joyful and normal as possible. You will shield him from unnecessary pain and upset, be his advocate for exceptional care and be sure he takes his meds, eats and rests.
You will stay by his side and hope for the best while choking on the worst. You will be there, holding his hand, kissing his head, reminiscing about the days of your 34 married years and telling him how grateful you are for him. You will say everything that needs to be said.
When the time comes you will unselfishly not hold him to the earth. You will release him to the next world, to live pain free. You will encourage him to let go, putting his needs before your own as he always did for you. You will tell him you love him as he takes his last breath.
You will honor him in death as you honored him in life. Better than you honored him in life. Your life will be a testament to his character, strength and love. You will go on.
It’s a deal.
Changes by David Bowie is one of those songs ripe for misheard lyrics , given Bowie’s accent and vibrant imagination. Other than the chorus’s first line, I’m lost. I actually had no idea that I’ve been singing along with the wrong words all these years.
Anyway, the line is:
Ch-ch-ch changes (turn and face the strange)
I always thought it was “face the strain” which is more appropriate for this blog post. So I’m gonna stick with that.
So, this is a post about change. And strain. And strangeness.
July 8, 2015 was the date my world changed forever. In a heartbeat, everything changed. I’ve told this story dozens of times, but never documented it. so here it is.
After a day at the beach, I was waiting for John to come home from work.John appeared, riding down our street on his bike. As a local mailman he enjoyed biking to and from work. He drove up the walkway, put his bike away in the shed, and joined me on the deck.
He sat down, hot and tired after a rough day. As always, we made small talk, but something was different. He wasn’t talking or smiling as he normally did. I chalked it up to the heat, so I just said things like wow, hot day huh ? Told him about the beach. No answer. Told him the kids went to Boston, we had the house to ourselves, maybe we’ll have a fire pit and relax. No answer. “Is anything wrong ?” I asked. No answer. Then he said”I don’t know” and that was his answer to each thing I said. Very strange.
I figured it might be heatstroke so I suggested he go take shower and then I’d get him something to drink and we could talk. He got up, went in the house silently, and got in the shower.
It wasn’t until this point that I thought maybe there was something medical going on. Maybe the heat stroke was more severe as he was older. I recalled his excellent physical only a month before when the doctor told him he was in great shape and would live to be 100. So I dismissed the idea of medical issues. But I figured I should go check on him just in case.
I saw him getting dressed in our bedroom, struggling to put on a pair of long jeans,and not wearing a shirt. He always wore a shirt, even to bed. And it was 100 degrees in the house. I asked him why he was wearing pants. He said “I don’t know”. I told him to get some shorts on and come sit in the living room to talk. He did.
He sat down in his chair, the recliner, I sat across from him on the couch. “Feel better now ?” I asked. No answer. Then he looked at me like he didn’t know what was happening, and said “I don’t know” This went on for another few rounds, me asking him questions and getting that same response. So I thought, maybe something happened at work. Usually he couldn’t wait to tell me the latest happenings at the PO, so this was strange. Maybe he got fired ? Maybe he got into an argument ? Maybe they were changing his route ? All kinds of crazy scenarios went through my head. Somehow I asked a question and he answered “I’m not sure.” I replied, “You’re not sure ? About what ?” And he said “I’m not sure about anything anymore.”
What ? Anything ? What did he mean ? The scenarios got even crazier- was he leaving me ? Was he going to run away and start a new life ? WTH ? So I asked him, how long have you felt like this and he answered it started about 10 days ago.
10 days ago ? WTH happened 10 days ago ? As I was racking my brain, he suddenly stopped moving, turned his very very slowly toward the wall, and went into a seizure.
At the time I didn’t know what it was. I thought he was having a heart attack. I started screaming “JOHN !!!! JOHN !!!! OH MY GOD !!!! JOHN !!!!”so loudly that my neighbors came running to help. They got him settled and such while I called 911. He came out of the seizure but didn’t know what happened. The EMTs came and got him into the ambulance, stabilized him,and I followed them in my car to the hospital, still not knowing what had just happened. My son and daughter met me there.
The EMTs reported he had had another seizure on the way. He was assigned a bed in the ER and we just waited. John was coherent but couldn’t remember what happened. I was so shaken and scared that i tried to explain it to the nurses, doctors, him and the kids but fell way short. I was just relieved it wasn’t a heart attack and that he was alive.
They took him down for a CT scan, brought him back, and we waited for the results.
They came. A young doctor told us the scan showed an abnormality, some type of growth, on John’s brain. What it was, they couldn’t say but they would admit him for observation and get him started on anti seizure meds until a neurosurgeon could consult.
That moment is frozen in my memory. Its like someone lifted the needle of phonograph and the music stopped, like a crazy game of musical chairs, leaving me chairless. Game over.
John had been holding my hand while the doctor told us the test results. I squeezed it harder and he squeezed back harder, holding onto each other. We were so stunned we couldn’t even respond to the doctor.
This is what I will always remember from that night: John looking at me still holding my hand, and saying “Life changes, huh ?”
Did it ever.
The journey is the destination. Paradoxes and oxymorons intrigue me. Duality, incongruity and irony can keep my brain occupied and spinning circles. The end is the beginning. Wherever you go, there you are. Philosophy for dummies.
Mindfulness is all the rage now. Live in the moment. Be here now. Sounds simple and obvious, because, well, we all live in this moment and we are all here now. Physically. However the directive is to allow your mind to live this moment. Shift gears, slow down, put aside your worries and just BE.
I recall a story of a misunderstood college lecture in which the professor lost a student when she thought he was teaching “bean theory” but he was actually teaching “be theory”. What does it mean to be ? Or as Hamlet quipped , “to be or not to be ”
Grief brings a unique understanding of being. The one you loved used to be. Now he’s not.
He IS not. He no longer IS. Is what ? Breathing, speaking, eating, all those action verbs. Yes, of course. But he no longer IS. Meaning he no longer exists. Physically. Unseen. Silent. Dead.
“But Margie, John is still with you. He will always be with you.” I hear this constantly and I repeat that consolation to myself. Sometimes I pretend he is still alive and riding shotgun as I drive. I reach over to hold his hand and smile at him when a song we used to sing along to comes on the radio. One dark, cold and wintry night I pretended he was on his way home from work and planned what I would cook for him. I have imaginary telephone conversations with my kids telling them, no, there was no tumor, all the tests were negative, Dads fine ! Wanna talk to him ?
Crazy ? No, coping. The grieving mind can’t accept what the heart knows, and vice versa. Rarely are they in sync. When they are, they call that ACCEPTANCE. The final of the 5 stages of grief. If they were linear, but they are not. But that’s another post.
So 2017 for me has been all about acceptance. Kicking and screaming I search for peace. To be ok with what is. To stop longing for what was. To just be.
Baby steps. One step forward, 3 steps back.
You can’t. You must.
But I don’t want to. Too bad. Suck it up.
But what if he comes back ? He’s not coming back.
He no longer IS. You, however, ARE.
But why ?
The question is the answer.
Remember that disco hit from the Ohio Players ?
I grew up in Winthrop, MA, about 4 miles from Revere Beach. Back in the day it was a strip of amusements, arcades, rides, bowling alleys, and clam shacks. The biggest attraction was an ancient wooden roller coaster called the Cyclone. Terrifying to behold, the rattling of the wooden tracks like a freight train mixing with human screams as it climbed and dipped – I never had the courage to take a spin.
Did you ever have a nightmare in which you were forced to confront your biggest fear ? That’s what widowhood is for me. It’s being forced to step into the roller coaster car (without a seat belt or safety bar) and take a never ending, harrowing, horrifying, breath stealing ride of terror. Up, down, hold it— here comes a hairpin turn —- catch your breath now. here we go again. Isn’t the view lovely from way up here ? I can see for miles ! OMG AAAAAHHHHHH hold on !!!!!!!!!!! Oh no !!!!!!!!!!!! HELP !!!!!!!!!!!! get me off this thing !!!!!!!!!!!!!!
Within the span of 5 minutes, my mood can swing in 20 different directions.
And just when I think the ride may be coming to an end, my car breezes past the boarding platform without allowing me to exit. I grit my teeth for yet another wild ride, watching the sights speed by as I grip the seat and tell myself “You got this – you did it before, this time will be easier”
But it’s not. I anticipate the turns and dips now after 19 months, I know they are coming. My triggers have been duly noted. I try to avoid them. But here they come again, the holidays, the memories, some wonderful and comforting. Some horrific. The trauma of watching John deteriorate bit by bit, unable to do anything but be there and love him through it. The complete helplessness, desperately clinging to a leaf of grass as we both inch closer to the precipice, falling falling falling into the black hole of death.
The horror of watching him die. Gasping for air. Unable to do anything but talk him into letting go. “It’s OK, you can go now. No more pain” I repeated as calmly as my broken heart would allow.
Yet inside I was screaming, begging him not to leave me. “Don’t go !!! I need you !!!! Please don’t go !!!!!” and swinging back to the reality that no matter what, the beast of GBM had already stolen him and this would not end well.
Holding his hand for hours after the life had left his body. Wishing death would take me with him. Knowing I would eventually need to let go of his hand and leave him to the care of the funeral home, never to hold him again.
Please stop the ride. I want to get off.